Legislative Support for treatment of Oligodontia

[Liza Katz]

Hi Everyone,

My name is Liza and I live in Massachusetts. My daughter, Siga, is 9 years old and missing between 10-14 of her permanent teeth (wisdom teeth still uncertain). We have not yet begun treatment, but like most people here, we're looking at years of braces, retainers, spacers, false teeth, etc, until she is old enough for implants. In MA, these treatments are not covered by either medical or dental insurance. I have been working with a group of parents here on two separate bills: one for cleft lip/palate and the other for craniofacial abnormalities. Last year, the cleft lip bill passed the house and Gov. Patrick signed it into law, mandating medical coverage for the dental treatments for this condition. Now, with the precedent of the cleft lip/palate bill under our belt, we are pursuing the craniofacial bill, under which oligodontia would fall.

If anyone in this group lives in MA I would love to connect with you and see if we can build support for this bill. I'm not sure how these treatments are covered in other states, but my sense is that most states do not cover these dental treatments. However, if folks in other states have any experience with or knowledge of fighting for coverage, I'd love to share stories. It is absurd that congenital dental disorders are not covered by either medical or dental and that the treatments are so expensive.

Aside from fighting for this bill, I'm also interested in hearing about different treatment paths and costs as I consider embarking on our own journey in the next year or two. We have been waiting to see how the adult teeth she does have come in, but I expect to begin some treatment soon. People here with older kids, or with your own stories, can you share your treatment path?

Wishing everyone well,
~Liza
Western Massachusetts

[Susan S]

New York State has legislation that covers "congenital disease or anomoly." NY Insurance Department Section 52.16(c)(9), Regulation 62 - medical insurance: Good luck!

[tricia]

Hi Liza, 

I live in Southern California but we have Blue Cross Blue Shield Of Massachusetts insurance through my husband's Boston based employer. Are you referring to House Bill 321 in your below email? I saw that this was proposed in MA and would allow for craniofacial abnormality coverage. I tried to find out today if that ever passed but wasn't successful. 

If you have a moment, let me know where any proposed legislation stands on this issue that you know about. Thanks so much, Tricia Lamm 

[A Weiss]

I was missing 11 teeth, and I'll tell you how my parents dealt with this in the 1960's and 70's.  My mother quit her job as a nurse at a local hospital and got a lower-paying job at the University of Missouri Health Center when I was 8 so that she could get dental care at the Univ. of Missouri Dental School with a 50% employee discount.  I had all my braces and retainers and bridgework done at the dental school when I was 14 years old at a huge savings.  The dental school is 125 miles away from my home town, so my mother had to drive me there every month for 3 years.  It was a huge sacrifice on her part that I wasn't really aware of at the time, but I bless her name now.

I am now 58 years old and the permanent bridges I paid to have installed in 1987 are reaching end-of-life and could shatter at any time.  I am thoroughly disgusted that I cannot get my oligodontia covered under any dental insurance or health insurance plan in Missouri, including Medicare.  I am going to start writing letters about this to everyone who will listen and some who won't listen.  This is a birth defect, but it has been excluded from every insurance plan I can find.  If anyone has any ideas about how to get this changed, I am interested in hearing from them. 

[Grace Lewis]

From what I understand (I'm still researching though) you need to have a medical diagnosis such as ectodermal dysplasia. Then it will be covered by your medical insurance company. It still won't be easy but you will be able to claim a genetic deformity by having the diagnosis. I had to have my son entered into a genetic study at the University of Michigan and send in a saliva sample. They diagnosed him with Odonto-onycho-dermal dysplasia (OODD) a rare form of ectodermal dysplasia. My son's prosthodontist has treated ectodermal dysplasia patients and says he is able to bill the medical insurance company with this diagnosis. My son isn't old enough yet for implants so I can't say yes it worked and my insurance paid. I am praying they do but I am also saving up for his teeth. He only has 5 permanent teeth. As far as getting legislation passed I would figure out who your local state representative and senator are and call them up and ask to meet with them in person. Some states have legislation passed like New York. If you provide a bill that shows it passed they will be more likely to introduce a bill. You could also reach out to legislators on the health/insurance committees to see if you can get one of them to sponsor a bill. Hope this helps!

Grace

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[Brian]

Hi Grace,

Thank you for your post. We discovered last year that our son is missing 16 of his permanent teeth. We have consulted with two orthodontists and scheduled genetic test next month at Children's Hospital in Detroit. We would appreciate any information on what has helped you so far in finding the best treatment and how the insurance issues work outfor you. We are about an hour away from Ann Arbor, so that may be an option for us as well.
Brian

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[Kim Loftis]

Hi all! 

I live in Arizona. My daughter is missing 20 of her permanent teeth. She is 17 years old and let me tell you it's been a struggle. For her self esteem, function, and trying to save the 12 teeth she has left. She was clinically diagnosed with severe oglidontia. I was informed that there are 5 forms of oglidontia, but molecular testing is only available for 1 of those forms in the United States.  Insurance in AZ considers implants as cosmetic, but if they were knocked out due to an accident they would be covered. I'm a desperate mother looking for help. Our latest estimate which does not include any back teeth, just the front teeth is approx $50,000.00. Does anyone have any suggestions what to do?

Thanks,

Kim

[Colette Purcell-Chung]

Maybe you could bring it to the media.  Most have a medical report once a week where they highlight new health risks, new treatments etc. If they pick up the story, make sure you have a fundraising website set up to be able to legally accept money if people decide to help once the story is aired.

Is there a nation-wide association that raises awareness and lobbies governments?  

Colette

[Barry Hudson]

Hi Liza, eaglewizdome, I would love to talk to you about your daughter. I am in same situation with mine and been working a plan.

I've been on the plan for about 5 years now with 3 different doctors. I am in Florida, but from Boston. I question what I'm doing, so would love to share detail. How best to talk with you privately?

[Patricia Lamm]

There is a Facebook group called "hypodontia support group" that discusses personal cases and also pending MA legislation. Request to be member of that group and look at previous posts. 

Tricia Lamm

Sent from my iPhone

On Sep 22, 2016, at 1:19 PM, Barry Hudson <zoe6...@gmail.com> wrote:

Hi Liza, eaglewizdome, I would love to talk to you about your daughter. I am in same situation with mine and been working a plan.

I've been on the plan for about 5 years now with 3 different doctors. I am in Florida, but from Boston. I question what I'm doing, so would love to share detail. How best to talk with you privately?

On Saturday, February 2, 2013 at 10:12:08 AM UTC-5, eaglewizdom wrote:

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